Experience with Dr.Levine

I have an appointment with Dr.Levine next friday. After a bought with mono 2 years ago iv'e been left with crippling fatigue. About 6 months ago i started getting very severe anxiety, hairloss, loss of appetite and even worse fatigue. Im really looking to see if Dr.Levine will prescribe cidofovir. Does anyone on this forum know if Dr.Levine prescribes cidofovir to any of her patients?

I truly think cidofovir is the best medication for CFS. However I'm sure other antivirals have efficiacy. What do you think works best for hhv6?

hi plastic. i know this is not what you asked, but i had a very bad experience with dr.susan levine that i thought i would share. she told me in 2007, in a very flippant manner, that i would not recover more than 10% (15 if i were lucky). i was really sick and it was all i could do to keep from committing suicide after i saw her. i had been sick over a decade at that time, and she said it was too late. she was rude on the phone when i called for my results also. even though we had an appointment, she did not have them ready and snapped at me!

on the other hand, many people like her and she isn't expensive. also, i believe she takes insurance.

i don't actually have any information on the treatment she is currently prescribing......the doctors whom I strongly suspect would prescribe Vistide, are Doctors Peterson, Montoya, and maybe Kogelnik.

when i recently called his office, i was told he no longer takes new patients...

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This would be news to me. I have a call into his office, but it is late on Friday afternoon so I may not get a response until Monday. I will do a follow up post after I talk with his office to find out if there has been a recent change in his practice.

hi plastic. i know this is not what you asked, but i had a very bad experience with dr.susan levine that i thought i would share. she told me in 2007, in a very flippant manner, that i would not recover more than 10% (15 if i were lucky). i was really sick and it was all i could do to keep from committing suicide after i saw her. i had been sick over a decade at that time, and she said it was too late. she was rude on the phone when i called for my results also. even though we had an appointment, she did not have them ready and snapped at me!

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I feel the need to defend Dr. Levine. I am a patient of hers and have found her to be responsive and caring. One thing that I truly appreciate about her is that she is realistic. I'm sorry @Daffodil that you had such a negative experience with her. I truly am. All I can think of is that she is human and sometimes (maybe 1 of 5 times) she isn't as tactful as she should be when stating her opinions to patients.

But, I find she makes up for that in spades in that she is very up to date on the latest research, does not claim to have all of the solutions (unlike other Dr.s in NY who often claim "my way or the highway" when it comes to treatment options), and is open-minded. She gets the CFS mindset. She understands that you have been disillusioned after seeing so many doctors who don't believe you. So when you come to her with the latest thing you read from the internet, she is not dismissive. She will listen to you and offer you her educated opinion. She is not a bully and respects her patients' intelligence.

In terms of drugs, I know she prescribes Famvir and Valcyte. I'm not sure about cidofovir.@plasticperson32, please feel free to DM me if you want to chat further.

yes many people seem to like her a lot...i dont get it. she gave me her email address. she answered a few emails, then suddenly said something like, "why should I answer your questions when people are paying me to do so?". after she told me i could not recover, she must have seen the look on my face so she said, again very flippantly, "yea..i know its depressing." i cannot explain it...it was as if she had no compassion at all. very strange individual; erratic moods.

to be fair though, almost every CFS specialist i have seen is a little.. different. decades of treating people who don't get better, decades of colleagues telling you you are foolish to try to treat a disease that "doesn't exist", etc...has to take a toll.

yes many people seem to like her a lot...i dont get it. she gave me her email address. she answered a few emails, then suddenly said something like, "why should I answer your questions when people are paying me to do so?". after she told me i could not recover, she must have seen the look on my face so she said, again very flippantly, "yea..i know its depressing." i cannot explain it...it was as if she had no compassion at all. very strange individual; erratic moods.

to be fair though, almost every CFS specialist i have seen is a little.. different. decades of treating people who don't get better, decades of colleagues telling you you are foolish to try to treat a disease that "doesn't exist", etc...has to take a toll.

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I hear ya. The knowledge is there, but so is the weariness. It must be hard putting on the game face 24/7 after all of these years. I also think she's a little ADD. Doctors are human. I still think she's the best of the NYC 3 (at least for me).

hi plastic. i know this is not what you asked, but i had a very bad experience with dr.susan levine that i thought i would share. she told me in 2007, in a very flippant manner, that i would not recover more than 10% (15 if i were lucky). i was really sick and it was all i could do to keep from committing suicide after i saw her. i had been sick over a decade at that time, and she said it was too late. she was rude on the phone when i called for my results also. even though we had an appointment, she did not have them ready and snapped at me!

on the other hand, many people like her and she isn't expensive. also, i believe she takes insurance.

i don't actually have any information on the treatment she is currently prescribing......the doctors whom I strongly suspect would prescribe Vistide, are Doctors Peterson, Montoya, and maybe Kogelnik.

best of luck!
xoxox

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I think it's highly unprofessional for a doctor to behave like that. People who have CFS and related illnesses are already in a distressed state and to make demoralizing comments or behave in a disrespectful manner can worsen their condition. Doctors - of all people - should know that!

Some personalities mix like oil and water.
Dr. Levine has been my doctor for about 5 years. I find her to be caring, professional, respectful, and
well informed. She does not at this point prescribe cidofovir.
A person "shops" for a doctor, the bigger issue with our community is the lack of physicians specializing
in ME/CFS.
I agree with PearlGirl26, she is the best of the 3 in NYC.

Better, not well really. It is the rare patient who gets "well," though some go into remission. This isn't the specialist doctors fault. They are working with the best resources and knowledge that they have. There is just still a lot unknown and few really helpful drugs available.

One of the dangers of "non-specialists" is that their lack of knowledge can do harm in the way they attempt to treat patients. Many of us have experienced that.

Specialists usually help by testing to find out the things that have actually gone wrong--pathogens, dysfunctional systems--and dealing with those to the best of their knowledge. It seems that if the patient is young and hasn't been sick long, the chances of remission are much better.

Better, not well really. It is the rare patient who gets "well," though some go into remission. This isn't the specialist doctors fault. They are working with the best resources and knowledge that they have. There is just still a lot unknown and few really helpful drugs available.

One of the dangers of "non-specialists" is that their lack of knowledge can do harm in the way they attempt to treat patients. Many of us have experienced that.

Specialists usually help by testing to find out the things that have actually gone wrong--pathogens, dysfunctional systems--and dealing with those to the best of their knowledge. It seems that if the patient is young and hasn't been sick long, the chances of remission are much better.

I see a specialist and have improved a lot....but I am not well.

Sushi

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usually CFS patients when they undergo medical tests don't have anything wrong with them clinically/pathologically. (They may develop medical conditions further down the line due to a restricted lifestyle). That means drugs are not the answer, although they might reduce some of the symptoms.

usually CFS patients when they undergo medical tests don't have anything wrong with them clinically/pathologically. (They may develop medical conditions further down the line due to a restricted lifestyle). That means drugs are not the answer, although they might reduce some of the symptoms.

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If they are tested with the right tests most things come back abnormal! Mine sure did, though an 'ordinary' doc would not have tested the 'likely culprits."

Yes, my daughter is fully functional (remission with some symptomatic treatments), my uncle is in remission (no symptoms). I have improved from bedbound to able to work part-time at a non-demanding job.